Tuesday, December 6, 2016

Tell It

I shared a memory in my AofA post this past Sunday.  It was about a hearing that happened four years ago.  That day, and all of the surprises that came with it, made for an exhilarating day.  Our representatives were listening!  They were really, really listening to us.  Not only that, they wanted to know more.  In the days that followed, families began to send in their testimonies.  I'd shared Ronan's story so many times before , but to sit down and draft a testimony was daunting.  If it was to become part of the record, I needed it to be perfect.  

I could do it, but something was keeping me from writing. 


Lots and lots of emotions.  

I'd have to push through every single of one them as I rehashed the everything that happened to my child.  Could I do it?  I knew I could.  But I procrastinated.  Big-time.  How does one consolidate a vaccine injury and all the disasters that came with that injury in a two-page testimony?  Praying to God that I could do it justice, I put pen to paper...   

5 December 

To the Committee on Oversight and Government Reform in response to the Congressional Hearing on Autism November, 29, 2012, Washington, D.C.

I would like to thank you for this opportunity to submit this testimony for the record.  I was present at last week’s Hearing and appreciate being able to share my son’s story.  Just like many of the testimonies you are probably receiving, my son’s story starts typically:  he was normal, happy and every parent’s dream.  Life is very different and also very difficult for him now.  

Ronan, who will be ten in three weeks, was born right before Christmas.  Ronan had great APGAR scores at birth (8 and 9). As he grew, he was cheerful, bright, met his milestones and was interactive with family and friends.  Everyone said how happy he was and how his chocolate, brown eyes were so full of life.  I had little knowledge of vaccines at the time of Ronan’s ‘well baby’ visits and followed our pediatrician’s protocol of vaccinating Ronan at each of those appointments. 

Ronan’s vaccine record starts on his second day of life, receiving a vaccine intended to give immunity for a sexually-transmitted disease, one he’d be years (if ever) of potentially encountering.  Including two flu shots, both given before he turned two-years old, Ronan had two dozen before his second birthday.  Several of those vaccines never did what they were intended to do—that is to give Ronan immunity.  We know this because we tested for those specific antibodies that should have been created from those immunizations.  Ronan’s body never created immunity which means the vaccines did absolutely nothing for him.  Ronan’s body instead reacted negatively to the vaccination assaults, assaults which plague him to this day: severe constipation and malabsorption issues, encephalopathy, seizures, sensory processing disorder (sensitive to touch, to light and to sounds) as well as a steady decline that landed him in the emergency room and admitted to the hospital several times.  Ronan lost the few words he had just started to say as well.  As Ronan grew silent, his bright and shiny eyes grew dim and he was no longer able to make eye contact. 

My child began to withdraw socially, was becoming neurologically impaired and was constantly sick.  Unfortunately, because I still hadn’t put two and two together about why Ronan was so sick, and because our doctor continued to vaccinate Ronan, even when our appointment was for a sick visit, the assaults to Ronan were astronomical.  

Ronan was not one of those kids who had an immediate reaction (like what are listed in the vaccine injury table).  He slowly tumbled into his regression until his body could take no more; he landed face first onto the spectrum and remains there today.  To add insult to the vaccine injury, Ronan is one of those kids who suffers severe medical issues compounded by his vaccines.  

It took some time for me to finally connect the dots to Ronan’s vaccine injury as I was still a believer in “the system” while readily accepting what our pediatrician said as gospel truth.  Once I knew what was happening with Ronan, and long after the vaccines triggered an underlying mitochondrial disease which added another great burden to Ronan’s body, it was too late.  So much damage was done.  It wasn’t too late to take some legal action though. 

Ronan’s vaccine-injury case is presently in the Vaccine Court (which is part of the National Vaccine Injury Compensation Program).  Originally in the Autism Omnibus, ours is one of only a handful that has survived in Vaccine Court.  Just this week, after almost a year of searching, we secured a medical expert who has agreed to review Ronan’s medical files.  So many doctors refuse to offer families like mine help because of how negatively they are treated by the Court.  It’s shameful that “our” side is so disrespected.  As with many cases in Vaccine Court, the special masters are doing everything they can to dismiss or stall cases, including ours.  

Should we win, and we pray we do, Ronan’s case could be life-changing, not only for us to validate what so many parents know (that vaccines don’t just result in autism, they cause it), but to have the means financially to care for Ronan for the rest of his life as his severe medical, behavioral and overall health issues remain costly.  Even though there is no dollar amount that could help me change the past, having the means financially to care for my still very sick little boy would be incredibly helpful.  Special education schooling, special dietary intervention, seizure medication, behavioral, speech and occupational therapy, doctor’s appointments and respite care adds up. 

We spend thousands of dollars a year make sure Ronan is healthy and safe (he is an eloper, running away with disregard to safety; Ronan wears a Project Lifesaver bracelet, which includes yet another monthly fee).  Our family sacrifices what other typical families take for granted.  Outside support for caring with an individual with autism is inadequate--state programs are underfunded and understaffed. Much of the responsibility of care for Ronan’s needs falls on me and my husband when he is home, and the few extended family members who are willing to help when they can visit.

My husband works two jobs to provide for our family and to be able to afford Ronan's extensive and on-going therapy.  I cannot work outside the home because of the great responsibility it is to manage Ronan’s needs.  I have though, gotten the opportunity to write and share Ronan’s story in several outlets.  Sadly, his story is now one of many that I know and have heard for too long.  Just like every other parent I run across, I came to the realization on my own that Ronan’s vaccines did more harm than good.  But, by the time I found out, it too late.  I was told that vaccines were ‘safe’, ‘effective’ and ‘life-saving’.  You cannot use those descriptors because aluminum, mercury, aborted fetal cells and many of the other toxic ingredients in today’s vaccines should never be injected into humans but are.  

If I may be so bold to state that the autism epidemic never had to be, and that it could have easily been avoided.  Parents were sounding the alarms that vaccines were hurting their children long before my son was born.  Those parents were ignored and their message muzzled.  Had their message been heard, I would wager a very large bet that the Congressional Hearings on autism would never have had to exist.  Sadly, it does.  So, until every child and child’s family has the chance to tell their story, and until the US government finally puts the brakes on our country’s over-inflated vaccine schedule, I must ask that this investigation on why the rise in autism please remain open.  Ronan’s preventable vaccine injury was never part of the dream I had as a new parent.  Nor was watching an entire generation of children fall ill like he has because of over vaccinating.  But, that is what happened.  Now, with the evidence you have gathered in every single testimony you’ve received, there is more than enough proof to finally do something to prevent the autism epidemic from increasing any more than it has.    


Cathy Jameson, mom to Ronan, autism advocate, writer, author

I'd taken my time to write that letter*, and it was perfect.  Unfortunately, though, because I took so long to write it, I now only had a few hours left to make sure it got to the committee before the deadline.  Too late to mail the letter in, I went searching for a fax machine.  I'd had bad luck using one in town previously, so I went to a local mom and pop pack-n-ship mail store.  I shared that encounter with some friends who had also taken time to send in their stories:
So, I hate Staples and go find another place to fax a copy of my testimony to Congressman Issa this morning. It won't go through on the first, second, third attempt at a tiny postal type of place. The owner says the lines are busy but that I can leave the papers and he'll try again later. I explained it is going to a Congressman and has to be done by 5pm. He assures me he will keep trying.
I leave it saying thanks and promise to be back after 1pm to pick up the receipt and pay. As I leave I think, I wonder if he will read it. I hope so.
I just went back to see if the fax was able to be sent and to pay the $3 fee. Walking in the store, the gentleman recognizes me and immediately says, "It's on the house; it went through no problem."
"What? Free?"
"Gratis. No charge. And, God bless you."
I have no doubt that this man read Ronan's story and was moved by the facts, the emotions and the brutal honesty that I shared in that testimony. His simple act of kindness of covering the cost of my fax was a generous gesture and what I feel is him recognizing that what parents face with this autism epidemic is real.
I held back tears as I left wishing him well and promising myself we will happily support his store from now on.

Sending in my child's story and sharing how it affected our family wasn't easy.  It was a painful reminder of just how difficult life has been for us, but it was important to speak up.  I still choose to speak up.  In fact, just yesterday I took time to let my representatives know my thoughts once more. From the comfort of my home, because now that I now have a fax machine of my own, I sent off a few faxes to a few offices in Washington, D.C.  I don't expect to hear back from anyone, but that won't stop me from saying what needs to be said in the future.  

Some pretty big things have happened since that hearing four years ago, but I think it's safe to say that parents are still waiting for more.  I know that I am.  And since my voice still works, unlike my son's, I'll keep reminding people that this is isn't over.  I'll continue to draft testimonies.  I'll continue to email Congressmen.  I'll take time to fax Senators, too.  And I'll tell our story to those who want to hear it. That story is hard to tell, but since I'm still able to share it, I will do just that.   

xo, Cat

* letter edited for this blog

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